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The solicitor, the student nurse and scholar activism

On Tuesday Katherine Runswick-Cole gave her inaugural lecture which touched upon numerous highlights of her work over the past 10 years or so. Well worth a catch up if you missed it. One of the things she talked about was #JusticeforLB and the responsibility of academics to be scholar activists.

The disability studies assemblage certainly did, as she highlighted:

I particularly loved this comment.

I remain chilled by the obscene focus of Sloven and Oxfordshire County Council on reputation immediately after LB’s death. And the eight months or so it took before his death made it into national news. That ‘random’ people now know what happened can only be a good thing.

Yesterday, a second year learning disability nursing student left a message on the #JusticeforLB facebook page. He wanted us to know how much of an impact LB’s story was having on his, and other students’, education.

He went on to say:

Nothing could ever make what happened ok. It will always be a tragedy. But LB is shaping the education nurses receive. He is changing the way people work who have been nurses for years, and most important of all, LB is making the lives of other people safer but ensuring they get the care and support they need.

[Sob]. Spot on. Nothing can make it ok. And I so agree about the impact and change. I’m not surprised in some ways. I mean, remarkable campaign magic has included walking a cardboard bus 100 miles along the Camino de Santiago in memory of LB, Danny Tozer, Thomas Rawnsley and others. In the past few years, we’ve collectively managed to prise open a [new?] space for the scrutiny of, and engagement with, preventable deaths (and, hopefully, non lives) of learning disabled people. Sadly, this focus is not replicated among relevant health and social care bods. We need no more evidence to know that it’s time to properly address and act on the barbaric and inhumane treatment of certain people in the UK. The CQC swerved from this opportunity with their recent deaths review. There seems little effective action from other parts of the NHS (or social care). Just the inevitable, systemic compromise as always. With nothing inevitable about it.

Anyway, here’s to Prof Runswick-Cole, scholar activism and a new generation of brilliantly enlightened nurses. We salute you.

For the last three decades I have watched and spoken to student nurses who have witnessed the neglect and abuse of mental health patients in north Wales – many of the students were excellent students and idealistic with it. A number of them tried to raise concerns with their tutors as to what they were seeing – no action was ever taken and a number of those students withdrew from the course, feeling that they could no longer participate in what was happening. What a lot of those students didn’t know was that their tutors and lecturers had recently worked in the same abusive units themselves or were married to people who still staffed those units. The problem is as bad today as it was thirty years ago – at a recent Health Board meeting it was admitted that students who had trained in north Wales were leaving en masse to work in England. Why are we not surprised?
I have followed the contributions of the academics whose work you have highlighted on your blog and twitter account – sadly, in my experience they are rare creatures. I watched for years as legions of psychologists and health and social care researchers in north Wales worked in ‘partnership’ with what they knew was a thoroughly abusive service – everyone knew what was happening to patients on the ground, but no-one breathed a word, let alone published it. In fact some very questionable research was published by some of the very same people, in respected academic journals, regarding ‘successful clinical trials’ – some of these researchers have been feted by the wider academic community. No-one seemed to notice the inconsistency between what was being published about the ‘pioneering work’ in north Wales and the sky high suicide rate in the region and the constant scandals in the mental health services up here. (The Health Board is now in special measures.) People were walking on egg shells around me because I did publish some of my experiences in the region’s mental health system – but I found that it was virtually impossible to place such work in health and social care/policy journals, I could only get it out in sociology outlets or books. Interestingly enough, as I started to publish this work, one of the staff from Bangor University’s HR Dept – who knew one of my friends socially and was very well aware of what had happened to me in the mental health system – used to nervously joke every time he saw me ‘you’re going to publish your autobiography one day aren’t you, we all know that you are – are you going to name people’?
I suspect that this phenomenon is not confined to north Wales – if a health and social care researcher wants to publish anything more controversial than yet another banal paper about ‘service user involvement’, they’ll have to find journals outside of the health and social care field. I noted when reading the historian Barbara Taylor’s work ‘The Last Asylum’ – about her own experiences in the mental health system – that she too was unable to find virtually any academic studies relating to matters such as abuse of patients…

It is not only the inhuman and barbaric treatment of people with learning disability that needs a
spotlight shone on it.

Redundancies are familiar to all these days – but the sacking of a member of staff in NHS/LA at any level is almost unknown – apart from mismanagement of money. There can be a tolerance of incompetence or inability to do the job, hidden and or protected out of misplaced professional and/or team loyalty, plus incompetent – weak management.

Witness nurse Beverley Allot who harmed babies.

Failed managers and leaders are recycled into other organisations. Team members who cant or wont – become cemented into the fabric of a team.

In already overstretched services, the impact of all this can be the avoidable death of a loved one at one end of the scale, to already burdened families living with stress and carrying loads for years that they should not be carrying; at the other end. Harm is avoidable if the individuals concerned are up to the job – or can be performance managed out of it.

Raise this with professionals who insist on within the profession supervision only – and the room will fill with shed and ruffled feathers.

‘Sacking of a member of staff in NHS/LA at any level is almost unknown’. Not quite true. A friend and dedicated nurse was sacked last year from a certain Trust. They fought back and won their case, but to the detriment of their mental health. They will receive a pay off, but only if they accept a gagging clause. In the past year, my friend has come across several other nurses in the same boat. They were all due to retire within ten years.

I agree. I too know of excellent people who have stood up to bullying and poor practice who were forced out of their jobs, one way or another.. One magnificent woman spoke up for me and my son to Ombudsman, and paid the cost is one such, She fought back and ‘won’ at employment tribunal – but at what cost . And a wonderful team manager also unsupported, tried to manage someone who was bullying and neglecting vulnerable people The member of staff brought a counter challenge of constructive dismissal.- the manager was suspended..and had a break down.

She was reinstated, but at what cost, Retired soon afterwards. The worker kept her job.

Courage, shown in face of poor leadership and weak management is not uncommon…too many injustices – happen.

I attended yet another gruesome meeting in a LA this week, on behalf of my son.

I have been urging for years that someone listen to him, (and me) that these reviews and meetings both in language and process effectively exclude the people they are for.

Son and others have stated they do not understand what is said or how it is presented. Usually yards and yards of words peppered with jargon. Just ticking a contact box for the file.

When issue raised, same words are repeated again just lengthening the ordeal – as though this will aid understanding. Families who interrupt the process to raise this – seen as disruptive and interfering.

A new PA was introduced for my son this week. She observed all, and spoke directly to my son – halted the process to discuss fresh and creative ideas (fresh to this organisation) that could help him be involved in his meetings. Basic stuff…but has brought huge respite for him (and me) – for a while, for I observed this breath of fresh air was not welcomed by all.

Issues that damage people are not all of mismanagement neglect and or abuse – but also of lack of creativity or competency – people struggling appointed above their ability and or influence – or who have become demotivated and jaded through long experience of them also,not being heard.

But in the end all falls on us – the family – who suck up all the negative stuff…keep on bu…ring on with the all monitoring etc, and just try to be heard…

If we get jaded or demotivated – or are silenced – the sky can fall in.

Our own competency I feel is an answer here, and we are around for however long – not just for ‘views’ or reviews or minimal input, but guidance, interviewing careworkers, staff rotas, etc.

Whether a person’s in hospital or care home or supported living, family member involvement is critical to prevent death, neglect, regression, etc., and to bring normal life back, as normal life is the goal.
Where a person has a willing family, they must be part of care, unless the oerson doesn’t want it.

A number of care agencies try and match good workers with people.
We’ve so many limits on sharing practices that we see in work or in our personal experience, because of confidentiality, but we can talk about practices without naming organisations – although we can name if a CQC report identifies good practice – otherwise, what’s the point of knowing if you can’t spread good practice?

Thing is the culture of LA’s vary hugely in approach to family involvement, Some are not a bit happy with even the odd question or minor concern. Some have swallowed the political correctness manual. Some are open and welcoming of ideas, others can view even a light suggestion as an attack. Not all families (where they exist) accept direct payments, and refuse them for good reasons, including leaving Statutory responsibilities with LA.. LA’s can take months and even years to seek/find the support they agree in care plans, leaving the family crises fighting plus doing the supporting and eventually seeking legal aid and legal advocacy.. All other aspects of their family life can disappear under all these pressures. Carers can become very ill. Also there is the perpetual monitoring task for family., For an LA can resist addressing issues with agencies they hire. Some LA’s only monitor contract and cost. Thus ensuring safe care is left to family, where it exists. Retaining the excellent support workers, who can be hard pressed and undervalued is essential. Families will always be reluctant to offend the agency.

Yes.
It’s tough if LAs don’t like to hear concerns, as they must, and there was a time I had success, but it depends on the social worker too. Good ones are like gold. Bad ones need exposing.

Unacceptable that families must ensure safe care alone, that they become ill, leave other needs of their own unmet.
This isn’t just an observation, it needs action.
Who are the commissioners, where all the money is bring spent, etc., are all questions the public have a right to know.

wobbly about the ‘enlightenment ‘ and ‘story of LB ‘. Only too pleased that the preventable death of a handsome young man does resonate.
Good practice is all that is taught in health and social care, only those that deviate from protocols and procedures fail in their duties. Safe care and support is a human and lawful right in this country, if you work in health and social care most people would assume you are enlightened to that fact .
It is frightening to think how many times the knowledge that LB’s campaign exists may have actually kept people safe and alive.